status migrainosus or vestibular migraine?

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status migrainosus or vestibular migraine?

Post  Lynn65 on Thu Sep 06, 2012 1:33 am

Hi,

I'm new to the forum, and while I have had migraines on and off due to neck pain previously, I am just starting my second bout of what the neurologist is calling status migrainosus. I struggle to grasp how it can be that, because although I had a headache over a week straight, the headache while bad hasn't been crippling, but the other neurological symptoms -- difficulty walking, brain fog, dizziness, difficulty sleeping -- are completely debilitating. The last day or so tingling in the outer toes and fingers on left side with coldness has started. I can only assume that is part of the same thing.

Last year I got this and had it for 5 months, and then one day all of a sudden it was gone - I wasn't dizzy any more. Between that episode ending and this one, I only had about 3 clear weeks without headaches, although many days the headache was just mild so I didn't take anything as it doesn't do much good anyway. This time prednisolone for 6 days got rid of the headache temporarily but none of the other symptoms. Now that I have finished prednisolone, the headache is back all the time bouncing around my head like an electrical storm.

Last time I got an MRI, ear / balance testing, CAT scan and all clear. The people at the ear hospital called it a vestibular migraine because of the balance issues -- and they said it can last a few years. I have tried vestibular physio -- the exercises made me quite ill (emergency room visit), but the best thing was it did give me a baseline -- one exercise took me over 90 seconds when I had the migraine, and soon as it was gone I could do it in under 25 seconds. I did have viral meningitis in my early 30s so perhaps a nerve was damaged that affects balance, and I had shingles on my head with neuralgia for years after that.

I have never gotten any sort of aura with migraines,and have always thought that I just had bad neck pain. I have been working on trying to manage stress with a daily routine of stretching, meditation and so on, and so far this time I have managed with the help of triptans and a relaxation approach to avoid any emergency room trips. I am also not as stressed about difficulties walking this time, as last time I found that very distressing, so that is making it a little easier.

I try to be very careful not to overuse medications, and my neurologist says looking at my list of what I have been taking that medication overuse is not the cause. However, I have been off work 2 weeks and when I go back middle of next week I know from how this went last time that I will really struggle. I have already flagged to my boss I may need to go down to 4 days a week.

Food doesn't seem to be a trigger. I have hypermobility in my joints and get my neck treated every two weeks to make sure that my neck doesn't lock up and aggravate my headaches, and for the first time I can actually tell that it is my migraine that is causing some of my neck and leg pain, and not the other way around.

I don't feel like I ever recovered from the last bout, with constant background headaches and breakouts over the last 7 months really impacting my ability to lead a normal life, so struggling to get revved for a second go. My dog whom I love very very dearly got sick over the weekendand I just had to leave it up to my partner to decide whether to put the dog put down or not because I just couldn't get stressed about it at all -- fortunately the dog came through okay, but it just highlighted to me sadly how far down I am in my ability to cope. I have always thought that I don't have bad migraines, but I came across the MIDAS survey recently and realised that my life is very heavily impacted by migraine.

I'm taking isoptin 360 mg at the moment, and will be asking the neurologist to try topiramate when I go back next week. I have tried deseril, sandomigran, and could not tolerate either. I only learned about triptans about 8 months ago and Maxalt helps to stop breakouts but doesn't stop the ongoing background migraine thing. Acupuncture has worked for my neck previously, but last time I had this acupuncture was like unleashing an electrical storm and caused a major migraine outbreak.

any thoughts from any one? I'm open to any comments or suggestions or stories. I am amazed at the range of treatments that other people are listing, as most of the drugs mentioned I have never heard of before.

Thanks for listening.

Lynn


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Re: status migrainosus or vestibular migraine?

Post  marco1968 on Thu Sep 06, 2012 3:17 am

Well a lot of that sounds like me (although I do think that when I read a lot of these posts). Big yes to "difficulty walking, brain fog, dizziness, difficulty sleeping". "Last year I got this and had it for 5 months"-> mine was about 4 months. Three major attacks in last three years and smaller attacks going back for years. "status migrainosus" yes to that too. There was some suspicion that I had viral meningitis at one point, but never any proof as such. Just that I had so many problems for a few months, but that the symptoms didn't come on instantly.

I'm struggling at the moment to concentrate and read your post (the nortriptyline has doubled my heart rate, so feeling a bit out of it). Forgive me if I get this wrong. I don't see anything about visual problems. Is your vision OK? I don't mean are you getting aura, but whether you have any other unusual visual things. How is your night vision? Have you ever had a period of visual noise ie haze and fuzz in your vision? Have you ever had just a few days of quite bad pain behind one or both eyes, where you had quite bad vision that was grayed out, or noisy vision, or photophobia?

Have any of your family ever had problems with balance or hearing, such as Meniere's disease? Meniere's disease can give you a lot of these symptoms... but that isn't much help really as you would just swap one debilitating and generally incurable illness (migraine) for another (Meniere's).

Some people with nerve damage (eg Meniere's or autoimmune problems) find that the conditions can temporarily be enhanced if they exercise or when the weather is too hot (or even too cold). Sound like you?

Any other strange things. Just list them for us... if you want.

"The last day or so tingling in the outer toes and fingers on left side" That really doesn't sound good. Get your doctor to do a test of your peripheral nervous system.

Sorry for all the questions. Understand that I want to know if there is overlap with my symptoms (selfish), but also I am concerned that you get the right help (less selfish). The more you tell us the more we can help, I hope.

M

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Re: status migrainosus or vestibular migraine?

Post  Jewishmother on Thu Sep 06, 2012 12:33 pm

Not my best day but wanted to just briefly add that my daughter has vestibular migraines......she has to be very careful how quickly she moves, turns her head etc...or she will trigger her vertigo. She has had successful with elavil as a preventative med. More later when my head is behaving......L
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Re: status migrainosus or vestibular migraine?

Post  Lynn65 on Thu Sep 06, 2012 5:12 pm

Thanks for both of your replies. Not that I would wish migraine symptoms of any sort on any one, but it is comforting to know that I am not crazy.

Sorry M, that you are feeling unwell and thanks for replying in the midst of all that. You asked about vision. Previously on several occasions over the years when I have gone to emergency and gotten an injection (phenergen, maxolon (sp?)), I have then spent a week not being able to go to work because my eyes weren't quite right. I could see, but just couldn't quite focus. I have always blamed it on the drugs, as they also made me very edgy. I have bad night vision -- depth perception is terrible. I find with this migraine episode that my eyes are just on the edge of being very annoyed -- like I can still read, but can see that it would be easy to slide into not being able to. I can't go to the grocery store to shop, and moving my eyes around at work from paper to computer screen and so on is a killer. I have never had gray fuzz in vision, or photophobia. No one in my family has meniere's disease.

When you say, that the in hot weather or exercise the condition can be enhanced, do you mean that the symptoms get worse? I find that I have zero intolerance to heat nowadays --I used to sleep in hot summers with a fan at the foot of the bed. That would be impossible now. Now in winter I have the heat on in the day and I have the air conditioning on at night to make sure that the room stays an even temperature.

A question re your attacks - would you call the symptoms of difficulty walking, dizziness, mental fog, difficulty sleeping status migrainosus? or something else?

You mentioned that you have had several major attacks over the last few years -- did they occur at about the same time each year? My last one started at beginning of July last year, and this one middle of August. That is winter here, so I am wondering if perhaps it is related to vitamin D deficiency (recent blood tests show vit D a little low and going back to doctor next week to discuss rest of blood tests).

Also, I am wondering if this has anything to do with pre-menopause. I am 47, and don't track timeliness of my periods (which I will start doing). over the last few weeks, a few times I have felt overly warm, almost sweaty particularly on head - but not actually raging sweating heat. I have asked my doctor, and she says unless I am getting hot flushes and irregular periods it can't be hormones. Has anyone else had these sort of symptoms-- heat with mild almost sweatiness, as just being a migraine?

Over the last 6 or so months my stomach has been a little bit upset, so I have changed from using milk in tea or coffee to soy. And I have for the most part stopped using sugar in tea. My stomach is probably happier, but hasn't helped headaches or migraines. Maybe I am not doing enough in this area.

Wierdly, I have not had a single cold or flu type illness of any sort since I got this in July last year.

L, thanks for that note on your daughter's vestibular migraine -- sorry that you aren't on your better days and that your daughter suffers from that. Yes, I can relate to being careful with head movements and such -- last time I felt like I had a limited number of movements in me for the day, and once I used those up, i just had to give up and go to bed. I planned my movements around the kitchen and the house to minimise number of times I had to walk or move. Sometime when you feel better, I'd be interested to understand more about how the elavil helps your daughter. Does your daughter's vestibular migraines last a long time? and does the elavil stop them from recurring or just dampen the symptoms to keep it from breaking out?

One other thing that is occuring, is that I can lie in bed at night and feel my muscles in the backs of my legs just tightening up, and no matter how much I try progressive relaxation and that sort of thing, those muscles just seem to have a mind of their own. I then focus on stretching out the muscles in the morning to try and stop it from rolling into a full blown migraine headache.

Thanks for listening and responding -- very comforting to not be sitting here alone in my own head.

Lynn


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Re: status migrainosus or vestibular migraine?

Post  marco1968 on Thu Sep 06, 2012 11:44 pm

It could be a whole bunch of different things. It sounds like (I am your self appointed, google-trained MD) you may have some minor (doesn't feel minor to you I bet!) nerve damage. It could be just as simple as B12 deficiency or it could be something wacky. I suspect that my symptoms (very similar to yours) stem from a mildish autoimmune problem, but I'm just holding onto the migraine theory for the moment.

Keep in mind that you are too old (sorry for saying that) for anything too vicious to have started upsetting your nerves. So you will probably reach 97 and still be ticking along just fine. That being said you have mentioned problems with vision and balance, possible peripheral nerve problems and palsy (or maybe just stress). I was going to say that you should get an MRI, but you already had one. So that means that whatever is happening to you is probably getting repaired by your body adequately such that it can't be detected on an MRI. That's a good thing and reinforces what I said above about you reaching 97+.

One thing I've noticed is that my heart rate varies a lot between when I am lying down and when I am standing up. Does yours do the same. I believe that this is another nerve damage indicator (POTS). Another thing which is talked about is an electric shock sensation when you bend your head forward. I don't get that one.

I think that my attack 2 years ago included a bout of optic neuritis that went undiagnosed (because everyone said it was a migraine). So I've decided that if I ever get eye pain and visual distortion again then I'll go to the optometrist (ie avoid the disbelieving doctors) for a check up. I believe they can detect inflammation of the optic nerve. Then hopefully I can get some decent treatment for it. Hopefully you will consider doing the same.

M

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Re: status migrainosus or vestibular migraine?

Post  Lynn65 on Fri Sep 07, 2012 4:55 pm

Those are interesting points you make about possible nerve damage. In a sort of random thought order.... I have been thinking that perhaps there is some sort of inflammation going - which could be in the nerve -- and considering whether an anti-inflammatory diet or approach might help, say reducing sugar further. I have joints in my neck that no matter how much I stretch, massage, tiger balm, get released by a physio, still just lock up "sticky" and then everything starts on from there to a migraine unless they are released again. I have been tested for rheumatoid arthritis, but not sure what else autoimmune one would look for.

I have to say that at this point I would be delighted if I was too old to get something vicious ... migraine and bung joints are enough for me.

I haven't noticed any difference in heart rate from lying down and standing up, although I do seem to hear more pounding of my pulse when lying down than I used to -- isoptin? Previously I have had episode where i wake up dizzy --fine if I lie in bed but can't sit or stand up -- and blood pressure is not the issue - always goes away in a few hours. Haven't had any of that with this.

Re difficulty walking -- what is that like for you? For me, if I walk faster than a stroll or for more than a few minutes, I start to slow down. If I push to try to go a little faster, my right leg starts to drag and I start to limp very noticeably. My hamstrings cramp up, possibly from the effort of trying to walk. When I come to the slightest incline, my speed goes from a snail's pace to an even slower crawl. Once I am over the incline, I can go back to a snail's pace. If I keep it up too long, I just get slower and slower. If I get the least bit stressed about it, I cry -- I'm not usually a crier, and to me this tearing up feels like a release of tension rather than despair. I find it easier to deal with if I just let it go, "oh, that's a migraine symptom" and roll with it. But at the end of the day, I still can't really walk. I plan to minimise movement around the house and yard, can't walk the dogs, and when I go back to work will be taking public transport even though it is just a 15 minute walk from where I live. Does it get worse over the course of a day for you, or vary?

No electric shock sensation when I bend my head forward.

I haven't considered eye examination specifically for this -- good idea to consider.

Thanks for your thoughts on this -- hope you are having a reasonable day.

Lynn

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Re: status migrainosus or vestibular migraine?

Post  Jewishmother on Fri Sep 07, 2012 5:14 pm

Lynne - You said in one of your posts here that you don't have aura symptoms......I think the difficulty walking, confusion etc... that you listed are all aura symptoms. There are 4 stages of a migraine: prodrome, aura, the headache, postdrome. We all don't go through all 4 stages however.

My daughter's migraines occur less frequently on the elavil.......her migraines started when she was in college but now that she is all done and the stress and the reading are minimized they are much better. She did see a neuro-opthamologist to rule out anything else going on.

I believe that my migraines are one part of a connective tissue disorder that I have named "Old Weird Harold's Disease" after my father. He always had odd physical symptoms that the docs could not explain.......he also had migraines and drug sensitivity which I also have. I think OWH is an inflammatory process - my body is not happy unless something is inflammed. I have a history of asthma and recurring pericarditis. I think my migraines are worse when the inflammation is low - when my allergies are in full bloom or I have a cold or sinus infection my aura symptoms are lessened............when I am feeling healthier my migraine aura symptoms reassert themselves.

Almost 4 years ago when my daughter's cat died (I am allergic to cats) my migraines then became daily though my asthma cleared up! One of my theories is that higher histamine levels help keep my migraines at bay............once this current sinus infection is gone I will have my histamine blood level tested.

Anyway...........just wanted to add those thoughts.....hope they make sense! L

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Re: status migrainosus or vestibular migraine?

Post  marco1968 on Fri Sep 07, 2012 7:26 pm

Not feeling good again today. Went to gym for second time in two months. Must have over done it. Woke up in middle of the night really overheated and disoriented. Really really really horrible sensation. Plus have come off nortriptyline, so that probably added to problems. I've tried beta blockers for migraines and my heart rate went to 32. The nortrip took my heart rate to 105 (resting heart rate <55)! I wish these medications would leave my heart alone!!!!
I digress...

>Those are interesting points you make about possible nerve damage.

Thank you. I'm not sure if its the same for you too, but I find that when I feel really bad with my senses closing off and the fuzzy brain I have to just concentrate on something. It can be work (which can be difficult), some stupid minor physical task, writing long-winded messages on migraine forum sites or reading about medical things online. Just anything to keep my brain busy so I don't think about how odd I feel. So maybe I've learnt something useful online or maybe I'm just grasping at straws.

>I have been thinking that perhaps there is some sort of inflammation going - which could be in the nerve -- and considering whether an anti-inflammatory diet or approach might help, say reducing sugar further.

I think that there is a good probability that there's inflammation going on. However, from a personal perspective, I find it very difficult to change my diet substantially. I have mild nausea quite often, so when I eat I tend to eat small energy-dense meals. One thing that was recommended to me is a low salt diet. This seems to have some actual scientific merit.

>I have joints in my neck that no matter how much I stretch, massage, tiger balm, get released by a physio, still just lock up "sticky" and then everything starts on from there to a migraine unless they are released again.

Stiff neck is also quite common for auto immune nerve problems as far as I can see. It could also be stress though. I also get a stiff neck. At one stage it was very persistent and quite painful. That is why the suggestion was made that I may have viral meningitis. However, the neck stiffness was nowhere as bad as it is for meningitis. I don't find that the neck pain progresses into a migraine as such, but that at some point I realise that I have neck pain. I thought for a while that because my balance was so bad that I was keeping my neck very stiff when I walked, but then I realised that after two days in bed my neck was actually worse.

>I have been tested for rheumatoid arthritis, but not sure what else autoimmune one would look for.

I don't know if they can test for this directly. It seems that it is only after you start getting measurable things happening that you get a diagnosis. If nothing shows up on your MRI then the chance of an absolute diagnosis is probably nil. Unless you are really really lucky they will probably say the same thing they do to me, that these problems are stress related. The problem with that is that I am only stressed when I feel ill. If I'm not feeling too bad then I'm actually quite able to cope.

>Re difficulty walking -- what is that like for you? For me, if I walk faster than a stroll or for more than a few minutes, I start to slow down. If I push to try to go a little faster, my right leg starts to drag and I start to limp very noticeably. My hamstrings cramp up, possibly from the effort of trying to walk. When I come to the slightest incline, my speed goes from a snail's pace to an even slower crawl. Once I am over the incline, I can go back to a snail's pace. If I keep it up too long, I just get slower and slower.

I have trouble with my balance and get disoriented by the movement of things around me. That is my main trouble. I don't find that I have trouble with the physical movements, but sometimes feel so off balance that I slow down and stagger about too much to make much headway. Unfortunately I live up a very steep pathway with lots of zig zags. When I'm ill (and especially at night!!) I have huge difficulties getting up that path without falling over into the shrubberies.

>If I get the least bit stressed about it, I cry -- I'm not usually a crier, and to me this tearing up feels like a release of tension rather than despair. I find it easier to deal with if I just let it go, "oh, that's a migraine symptom" and roll with it. But at the end of the day, I still can't really walk. I plan to minimise movement around the house and yard, can't walk the dogs, and when I go back to work will be taking public transport even though it is just a 15 minute walk from where I live. Does it get worse over the course of a day for you, or vary?

Wow. Same here. I am not a crier (being a tough NZ guy and all!) but almost burst into tears at doctors office. I am actually really scared. I feel so disoriented sometimes and I just hope that the feeling is going to go away. I just have to breath and relax and try and distract myself. Movement of things around me is very disturbing sometimes. Find it very difficult to watch TV and movies because the movement of things make me feel very odd. And, yes, the symptoms vary. After a day of concentration I get to the end of it and feel like I'm swimming through some sort of fluid sensory experience. Oddly, also, I can sometimes get very intense symptoms around midday... low blood sugar, too much coffee... who knows.

>Thanks for your thoughts on this -- hope you are having a reasonable day.

Unfortunately not :-( But, I hope you are coping alright for your day :-)
All the best
M

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Re: status migrainosus or vestibular migraine?

Post  Lynn65 on Sat Sep 08, 2012 1:52 am

Hi L, thanks for your reply and thought provoking comments. That's interesting about the difficulty walking and confusion being aura symptoms -- is it still aura if I really only get them after the full bore migraine headache has started? (i had been thinking of 4 clearcut stages, but perhaps that is a human invention which works 80% of the time, and sometimes they can just overlap?)

I'll be sure to ask my neurologist about neuro-othamologist and elavil

Thanks for sharing that about your father -- good to see you have a sense of humour about physical ailments! does help to get one through! I do have a ligament disorder hypermobility which I believe is the cause of a lot of my muscular / joint problems -- my mother has it worse than I, and a friend's daughter has a severe case. I will go back and look into that -- I had forgotten that hypermobility is one of those things that has other symptoms as well. I am not sure if that is considered inflammatory but I will do some investigating -- thanks for that lead.

That is a bummer about your asthma / allergies and migraines, but a very interesting observation about the body's natural level for inflammation. I would have thought the body would gravitate to a low level of inflammation... I'll keep that in mind in thinking about some of the inflammatory type things such as joints and muscles.

good luck with your histamine blood level testing -- hopefully it provides a useful lead.

Lynn

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Re: status migrainosus or vestibular migraine?

Post  Lynn65 on Sat Sep 08, 2012 2:20 am

Hi Marco,

Thanks for your reply. Sorry to hear that you had a bad day. It seems frustrating particularly when it isn't just a bad 5 minutes, or bad half hour, but a whole bad day. Once a day starts out bad for me it feels like just trying to get through time to get to the next new day which hopefully is better.

When I am feeling fuzzy brained, I find I can get into not helpful behaviour, such as worrying or trying to do tasks that are really outside my capability. I actually feel like this migraine thing just makes me plain stupid. My job in IT involves finding connections between things, and with this migraine I just know that I can't follow a thread as far, or understand things. Some things I just let go of, like figuring out how software applications on my Mac works -- I now ask my partner to do anything that involves more than a couple of moving parts of trying to figure things out. I do end up concentrating on things, but they are simple things, like solitaire on my ipod (and normally I really really really don't like solitaire) -- with this I find it very soothing to play solitaire, perhaps because it does calm my mind, like your focusing on one thing.

What I am doing this time different, though, is stretching and meditation and deep breathing. I figure if I don't get anything else out of this, I am going to develop some good helpful skills in those three things. I am finding that if I do 20 minutes deep breathing (I use an iphone app to keep the timing right) or a meditation, some of the symptoms do quiet down a bit after about 10 minutes -- they don't go away, but it can help me prevent them from running away and breaking out of control. I don't think that meditating 24 hours a day would fix me, but I haven't tried either. and maybe it is just the fact that I am keeping still, who knows!

Re the off balance -- have you been to see anyone about vestibular physiotherapy or vestibular exercises? In *theory* when ever the vestibular / balance capability is damaged, the brain does in most cases recover that capability over time, I think because there are so many moving parts to make that work. I have to confess that last time I found the exercises too disturbing for my migraine, but then I wasn't doing anything like meditation or deep breathing to be able to calm myself down after an exercise. Since then I have also adopted a slowly slowly approach. Now if I can only do one repeat of an exercise a day, I will still keep at it, and eventually I will get to two repeats, and then three (although I am still not game to try those vestibular exercises). My mindset has changed a lot -- about 3 months ago I decided that I was never going to get over my neck / muscular problems, so I just had to accept that, and I now stretch 5 or 6 times a day. If nothing else, it gives me something to focus on and gives me a sense of control over this, real or not.

>Wow. Same here. I am not a crier (being a tough NZ guy and all!) but almost burst into tears at doctors office. I am actually really scared. I feel so disoriented sometimes and I just hope that the feeling is going to go away. I just have to breath and relax and try and distract myself. Movement of things around me is very disturbing sometimes. Find it very difficult to watch TV and movies because the movement of things make me feel very odd. And, yes, the symptoms vary. After a day of concentration I get to the end of it and feel like I'm swimming through some sort of fluid sensory experience. Oddly, also, I can sometimes get very intense symptoms around midday... low blood sugar, too much coffee... who knows.

The Aussie guys here are just like you Kiwis! tough blokes that don't cry! (would it help if you thought of crying as emotional vacuum cleaning of the brain? probably not!) I empathise with your fear -- that sense of not knowing if the dizziness will ever go away is truly scary. I think your dizziness is worse than mine -- most times I can watch TV and movies (I close my eyes for any shaky camera or moving around too much), but I do often have that sense of the movement of things almost being too much for me, and reading almost being too much for me. If I end up not being able to read, I will struggle. More and more I am convinced that the brain is actually very stupid -- and it is possible to trick yourself -- so I am trying to use language like "I wonder if I will be able to keep working", "I wonder if this dizziness will go away." For some reason that "trick" of speech helps me more than "What if I can't keep working?" and "What if this dizziness never goes away?". Yes, small stuff, but I am grasping at straws for whatever helps, no matter how small!

I hope that you have a better day tomorrow!

Lynn

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Re: status migrainosus or vestibular migraine?

Post  marco1968 on Sat Sep 08, 2012 2:50 am

Its interesting how we are approaching this from different angles. You are being very zen and I am just reading lots of medical junk on the internet. Feel that your strategy may be better in the long run :-)

I'm in IT too. Programmer and research. I get into a very dumb phase when I'm sick where I can do very repetitive tasks, but can't plan or remember or progress and so can't do the full range of my work.

>I do end up concentrating on things, but they are simple things, like solitaire on my ipod (and normally I really really really >don't like solitaire)

Ha ha! Same here. But my game is the old old Civilisation. I really hate that game when I'm well. But when I'm sick it is perfect to play over and over again because its simple and slow moving.

> have you been to see anyone about vestibular physiotherapy or vestibular exercises

Good idea. Nobody ever suggested it. Can I find one and get an appointment is the question. Also though, my vision is distorted and sensitive to some things (like contrasting lighting and flickering lights). This means that I'm not sure that its all just a balance thing. Think that its a disagreement between eyes and ears. For example, I can usually balance with my eyes closed, but with them open things become more tricky. So feel like the visual aspect is confusing my balance system. I have difficulty when I'm really ill working out if things are level or vertical or straight. So when I move around in this distorted world, with a possibly impaired balance, then I tend to fall over.

Thanks for talking this over with me. Feel better that there is someone walking a similar path, although sad for you (and me) that we have to walk this path!

Mark

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Re: status migrainosus or vestibular migraine?

Post  Lynn65 on Sat Sep 08, 2012 7:31 pm

zen sounds like an intention. I think of it more as desperation :-( And I think doing the medical research is a good idea -- I don't believe that ignorance is bliss!

Yesterday ended up badly for me -- sudden outbreak of migraine for no apparent reason (food? or signalled by euphoria / irritability earlier in the day?) -- no idea. Triptan, aspirin, caffeine, cold pack, sleeping tablet - night of sleeplessness then intense dizziness and nausea this morning. Heat pack, tiny head movements (like feldenkrais), hot tub, meditation -- scraped through without vomiting -- still dizzy but not as bad. Today will be one of my days where I try to make the best of it waiting for tomorrow.

I followed up on the inflammatory idea from Jewishmother, looking into hypermobility (Jewishmother: Thanks again for that!). Interestingly, with hypermobility twice as likely to have migraines. Dizziness and fatigue also more likely. Seems to be some sort of run down type thing (not a medical term). I could see that for me -- my neck issues are definitely related to poor joint stability, cause headaches and sometimes migraines, and are chronic. Not sure what that means, other than unless I get totally on top of neck issues (not quite sure how, i have been trying for 30 years), this vestibular migraine / status migranosus will not be going anywhere.

I've only had a couple of appointments with a vestibular physio, but one thing that struck me is that a lot of the checking out that they do seems to be clocking you doing a particular activity, and involves things like standing on foam, or on one leg. I can't remember any actually touching required. Potentially if you can't find someone local maybe you could find someone who would do a video consultation.

Same here -- thanks -- nice to have the discussion. Okay, that's me done -- too dizzy off to recuperate.

Lynn

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Re: status migrainosus or vestibular migraine?

Post  Kate on Sun Sep 09, 2012 7:53 am

Lynn, I get over heated easily too(like you discribed) and use to be able to tolerate heat better than I do now. I was told by a friend who is way beyond menopause that it was the same for her before she started hotflashes(though some never even have hotflashes). She said that it started out(pre-menopause) with being overheated a lot. Not to mention, your cycle not always being consistant. Being in your late forties, this should be a no brainer for the Dr.

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Re: status migrainosus or vestibular migraine?

Post  Lynn65 on Sun Sep 09, 2012 5:54 pm

HI Kate,

thanks for sharing that -- I am seeing my GP on Tuesday and will bring up the pre-menopausal again. I have never had this sort of heat from a migraine before, so I am guessing that it is more likely to be pre-menopausal. After all there has to be a limit to the number of symptoms one can get from migraine and surely new ones can't just keep popping up!

Also, I have stumbled across another forum that deals specifically with migraine associated vertigo (www mvertigo org). It may be of help to anyone else who is having migraine related vertigo type symptoms.


Lynn

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Re: status migrainosus or vestibular migraine?

Post  marco1968 on Sun Sep 09, 2012 7:39 pm

Hey! I'm a guy and I have terrible heat tolerance. Is this the male menopause? :-)

As I said before, heat and nerve damage do not make good bedfellows. Then again heat and any condition that affects your senses is probably upsetting.
M

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Re: status migrainosus or vestibular migraine?

Post  Kate on Mon Sep 10, 2012 8:35 am

Marco, you obviously have no clue.

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Re: status migrainosus or vestibular migraine?

Post  marco1968 on Tue Sep 11, 2012 3:36 pm

Sorry if I annoyed you. I was just joking around.

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Re: status migrainosus or vestibular migraine?

Post  Lynn65 on Thu Jul 11, 2013 4:32 am

Hi,
I haven't posted in a while, but everyone here has been so helpful I wanted to post an update.

I switched neurologists late last year -- old one said he "wasn't having much luck with me" -- that scared me as I am not the gambling sort! -- and new one (recommended by a colleague) at least had a new take on things.

She seemed to think I had Mollaret's meningitis -- viral, usually from shingles virus with migraines from that.

I did have shingles when I was 32, and viral meningitis at the same time.

While this has been horrible, it has been nothing like what I had when I was 32, so I never even thought that this could be meningitis.

What I have had doesn't really fit Mollaret's -- it is supposedly benign and relatively short. For me it has been 6 to 8 months each of the two times to getting better. (This time I have noticed that some cognitive functions are totally shot -- for example, my math skills went to zero -- could not add two small numbers in my head and get the right answer, struggled to add up a few numbers on paper.)

However, as I continued investigations Mollaret's started to make more sense.

I complained of difficulty sleeping, and my (relatively) new GP recommended a sleep doctor, and he diagnosed severe sleep apnoea. I now sleep with a dental appliance to push my lower jaw forward at night, and am sleeping much better. That has really helped.

The sleep doctor recommended someone who specialises in chronic orthostatic intolerance -- low blood pressure.

That specialist confirmed that I have joint hypermobility syndrome, and said the reason that I was having so many difficulties with headaches and dizziness was that low blood pressure was causing the problem. I went home and measured at home and was having blood pressure readings of about 84 over 52 or 48. However, I had never noticed this because I never got dizzy standing up, just kind of dizzy all the time.

Turns out the first neurologist had given me verapamil and upped the dose to 360mg. Supposedly if you don't have high blood pressure it doesn't take your blood pressure down, but it did on me.

I have cut the dose down on Verapamil, and have been able to get down to 60mg per day but no less -- I have tried three times to go off from that but each time I get daily migraines within 2 days. I am trying to let that go and not be too fussed about that -- the only real inconvenience is if I forget to take my 1/4 tablet I will then start getting migraines.

I still take Endep 5 mg a day, but am just starting to try and go off of that as I think it is affecting my appetite.

Once the inflammation in my head finally died down and I had the verapamil down to 60, I still had a chronic headache that frequently flared up, often into a migraine. Both the neurologist and my GP said that it probably wouldn't go away.

I did as a last resort do a test on a machine for whiplash as I felt like my migraines were coming from my neck -- I still have to get C1 and C2 vertebra gently loosened every 3 weeks as they get "sticky" and then that leads to a migraine.

Turns out that the only neck muscle that I had with normal strength was one that I had been doing an exercise for -- the rest were really weak.

I can't manage the travel to the machine twice weekly to strengthen them, but I am doing exercises with a ball, a theraband and against the wall for the neck muscles. I have been doing them for about 8 weeks -- and even though I am still very weak (took 8 months to get any real strength in that one neck muscle) -- already have found that I do not have a headache all the time!

I am now trying to do exercises with great regularity -- but very gradually, nothing that stresses my joints too much as that just then tightens things up and brings on a migraine. (In my case, there is only gain when there is no pain when it comes to exercise!)

I have stayed off caffeine, and food preservatives, but not doing the full migraine diet anymore.

I am still taking 2000 iu of Vit D a day, 4000 of fish oil, B6, B12, Mg and use Magnesium Oil liberally on my neck (that helps when my stomach can't take as much Mg as my neck needs).

Yes, I still get migraines coming on but am at this point able to catch them (so far and fingers crossed) with aspirin or Maxalt.

I have my fingers crossed that I won't get sick again this winter (in the southern hemisphere). If I make it through to October I will consider that perhaps I am out of the woods.

I still don't really know what I have had -- my best guess based on what the "experts" tell me is mollaret's meningitis, which set off migraines, that were aggravated by joint hypermobility syndrome (with the orthostatic intolerance and laxity of joints in neck) and by the blood pressure medication from the neurologist.

I know everyone's migraine profile is completely different, but like I said, everyone was so helpful to me when I was trying to work through, I just wanted to come back and give an update.

Thanks for all your help! Any further advice, happy to take it on!

Lynn


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